89 Frequency and Impact of PANDAS/PANS Diagnosis in Canada
Notice bibliographique
Résumé
Abstract Background Paediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS/PANS) are defined by abrupt onset and episodic course of neuropsychiatric symptoms associated with infection. There are challenges in the application of published diagnostic criteria, and the frequency of diagnosis is unknown. To date, there is little data on clinical practice patterns in diagnosis, assessment and treatment. Objectives The aim of this study was to estimate and characterize the frequency and impact of the diagnostic label of PANDAS/PANS in Canada. Design/Methods Through established CPSP methodology, over 2,800 paediatricians and subspecialists were surveyed for children seen in the previous month who had received the diagnostic label of PANDAS/PANS. Respondents completed a detailed questionnaire on demographics, clinical presentation, diagnostic evaluation and interventions. Results Between December 1, 2019 and November 30, 2021, 84 reported cases received the diagnosis of PANDAS/PANS. The majority were female (48/84, 57%), with mean age of symptom onset 9.4 years (range 3 to 16 years). Of the 84 cases, 82% (69/84) had OCD and/or acute food refusal, 39% (33/84) had tics and 32% (27/84) had both OCD and tics. Symptom onset was described as sudden in 22% of cases. The vast majority of cases had at least two neuropsychiatric symptoms (80/84, 95%). Infection was associated with symptom onset (22/84, 26%) or exacerbation (25/84, 30%) in less than one-third of cases. Healthcare utilization included emergency-department visits (29/84, 35%) and inpatient admissions, both medical (8/84, 10%) and psychiatric (8/84, 10%). Three quarters (52/68, 76%) of cases had five or more health care visits since symptom onset and 31% (24/78, 31%) accessed more than five health care providers. Medical treatments were provided in 95% (80/84; antibiotics, NSAIDS, steroids, IVIG or rituximab), 95% (80/84) received psychological and/or psychiatric treatments, and more than 50% (42/84) of patients saw a complementary/alternative health provider. Almost all cases (84/85) experienced significant negative impacts, including family stress, mental health concerns, or conflict (54/84, 64%); school absences (43/84, 51%); and withdrawal from activities/friends (33/84, 39%). In forty-one percent (33/81) of cases, there was a significant discrepancy in the certainty of diagnosis, with families significantly more certain than reporting physicians. Conclusion PANDAS/PANS are rare diagnoses, associated with a significant burden on children, families and the healthcare system. In reported cases, there was significant practice variation in diagnosis, assessment and treatment, with frequent uncertainty about the diagnosis. Education and clinical practice guidelines are needed, targeting a range of practitioners.
Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.
Comment cette classification a été obtenuedéplier
Prédiction machine sur la base complète
Imitation des enseignantsNi prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,001 | 0,005 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,000 |
| Bibliométrie | 0,002 | 0,004 |
| Études des sciences et des technologies | 0,002 | 0,001 |
| Communication savante | 0,001 | 0,000 |
| Science ouverte | 0,001 | 0,001 |
| Intégrité de la recherche | 0,001 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,003 | 0,000 |
Scores machine (provisoires)
Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.
Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.
score_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».